Big changes

A lot of things can happen in two months. Especially if these are December and January.

The deadline for Davide to submit his PhD thesis was before Christmas. Things were going quite well, but nevertheless there was some pressure, restlessness and anxiety in the air we breathed. Davide's thesis submission was followed by a medley of weird feelings and sensations. I guess it took a while until Davide sunk in this new reality. As for me, I couldn't stop feeling useless. I wanted to be there for him, help him going through this final stage and transition, witness every moment as great accomplishments (as in fact they were!), and express the proud and admiration I feel for him. I did my best. I helped him with everything he asked, but I couldn't help myself from feeling that it wasn't enough, that I should've been doing more for him. I did my best. But there was this thing setting me apart.

Meanwhile I received an email confirming I had been selected for a two-months summer internship with Statoil, in one of their offices in Norway. Statoil is amongst the largest oil companies of the world. What a privilege to do an internship with them! Davide, my family and my PhD supervisors were thrilled. I felt contentment. But there was this thing setting me apart.

We spent Christmas with Davide's parents in Lagos (Portugal), their home town. We flew to Portugal on Christmas Eve, arriving just in time for dinner and sharing gifts - always my favourite part. But there was this thing setting me apart.

New Years. Davide and I don't appreciate it or celebrate it as a big event. So both of us were set apart.

Family reunions, meetings with friends, going out for walks or rides, enjoying a bit of time-off... whatever the activity, I always feel apart.

Being in constant pain sets me apart. Even surrounded by the ones I love the most, I am apart. Alone. Inside a dark bell jar. Alone with my pain.

Tiredness, weakness, nausea and vomiting would frequently join us. And the day would be ruined, spent shivering in sweaty bed sheets.

Others don't understand us - my pain and I. Some look at us with pity eyes. Some look at us with suspicion -  I read in their expressions accusations of overreaction, exaggeration, laziness, hypochondria, attention seeking.

My appearance is normal and healthy - my photos prove it. There is no physical sign of my disorder. This is in fact an invisible illness. I don't like to complain, otherwise I would be complaining all the time. I hide it all the best I can behind a sad smile - my quite effective mask. Nobody really sees it. Nobody knows my everyday struggles. And so, nobody understands its severity. Nobody except someone who is going through the same. Someone as alone as I am.

Davide supports me the best he can. He is the only person that actually sees how this illness affects me.  He also feels it in his own way. It hurts him. It hurts us as a couple, more than we dare to put it in words and admit to each other.

In early January 2012, my pain and vomiting led me to the hospital. I was told I had a gastritis due to medication abuse. The doctor was also concerned about by the state of my liver. I had been taken the maximum dialy dosage of paracetamol (max. = 4000mg; combined with codeine) for several months, which causes irreversible liver damage. I was prescribed a new pain drug (2x 500mg metamizole per day) to be taken alongside with co-codamol (4x 30mg codeine/500mg paracetamol per day), in order to reduce the daily intake of paracetamol. Also I was given a strong nonsteroidal anti-inflammatory drug (NAID; 2x 90mg etoricoxib per day), which wouldn't affect my stomach too much.

We were back to Cardiff in mid January. I went to our GP (general practitioner) to discuss my new medication. Unfortunately, none of the new drugs are available in the UK. Apparently these were banned due to the risk of heart disease development. So my medication was changed once more. Despite my concerns about my liver, I went back to the maximum dialy dosage of co-codamol (8x 30mg codeine/500mg paracetamol), taken with another NAID (2x 250mg naproxen per day). I requested a liver function test, which assured me that no major damage had been done so far. However, my stomach upsets were even worse, as each naproxen pill felt like having an acid bomb exploding inside me. I would spend days vomiting from the moment I got out of bed until bedtime again. My face and neck would be entirely speckled with blood spots (facial petechiae), such was the effort/physical trauma of vomiting.

And then I received another email. I was being invited to participate on an IODP scientific cruise, starting in April 2012 in Japan. This was my dream coming true. I received it with tears. Painful tears of frustration. This weakened and drug-intoxicated body of mine wouldn't be able to cope with two months of hard offshore work. But this was my dream coming true. A lifetime opportunity! I couldn't just let this go away without a fight. I couldn't just surrender myself to this illness. I just couldn't accept having my whole life controlled by a TMJ disorder.

I had to find something that would help me reduce the pain, reduce my medication intake and improve my general health. I was on a quest to find an alternative solution.